I was AMAZED at how God used a few people to organize the GoFundMe Site, the Church Benevolence Fund The Community Fund and then all of those who read my story and donated out of the goodness of your hearts. You truly are the heros. Without you, we would not even been allowed an appointment at Stanford, as we had to prove we had the money to do the procedure. You need to know that words cannot express how completely HUMBLED Rob and I are by everyone's generosity. You have truly given us a gift that we cannot repay, but we are so thankful for and we so appreciate your kindness you have bestowed upon us.
So we get down there and get to our first appointment with the Oncologist Specialist. To back up, our procedure we down for was a repeat Gamma Knife Procedure and in my case they were going to do the non-invasive form called Cyber Knife. I would do a series of tests, the doctors would use satellite mapping and map out the right path to my nerve and then I would be fitted into a machine and given high doses of radiation and laser therapy to hopefully injure the nerve enough to prevent me from the agonizing pain that I suffered day in and day out.
Stanford is a teaching hospital so we first met with at resident. We went through the entire story, history, showed them the MRI's everything. Then the regular doc came in. Keep in mind, I sent letters of desperation to over 50 specialists around the US, this Doctor, Dr. Soltys, was the ONLY doctor who responded to my email letter and offered me any option of hope. He deserves a metal and that is why we chose Stanford. Dr. Soltys had a great bedside manner. He explained things flawlessly and with such care and compassion. He said that after examining me, and seeing my MRI's that he really didn't feel the CyberKnife procedure was going to offer me much help and if it did it would be shorter lasting than the first procedure I had in 2010 that lasted just over 9 months. I was so sad, however, he did offer us the option of MVD, Microvascular Decompression Surgery. So there are 9 types of Trigeminal Neuralgia. The most common, is Classical (I had about 20% classical), Atypical, (that is what I have) and then MS caused, (a possibility for me, but undecided), and then others that are caused by dental work gone bad, accidents, and more. But what they did see that was encouraging is that right on my Trigeminal Nerve they could see a major artery compressing against the nerve. This made me a candidate for the MVD surgery. I was given about 70% chance that it would solve my problem. Dr. Soltys didn't want to make any further decisions regarding the other procedure until I met with the next specialist immediately after him.
Dr. Chang, the Neurosurgeon. At first, I was a little intimidated by him. He came in to the room in his scrubs and started asking me hard questions very firmly. Like, how much pain is this, and how much is that. I was so afraid if I said the wrong thing that I would be sent home with no help. So I started crying. After we got through that I was able to tell him what was going on and he came to the same conclusion that Dr. Soltys did, that the MVD was the best choice. I looked at him and said, "Please don't send me home." I can't go home to my kids like this. The nurses and coordinators quickly told him about us being self pay. He left the room. He came back and said, I can't do it this week, but if you get your finances worked out, I will do it for you on Monday. Monday, I can do Monday!!! There was a glimpse of hope again:I could still possibly go home pain free.
But now back to the finances. Major Brain Surgery is much more expensive than Cyberknife. Not only are they cutting into your skull and you are taking up a operating room for 3 hours, you have to stay in ICU a minimum of one night, and then the hospital 2-3 more nights. Every person is different and each person has different scenarios. The coordinators worked hard to give us an estimate based on the middle ground of other patients. With all the money coming in, and a SPECIAL GIFT, that HAS TO BE PAID BACK that came in just so I wouldn't be sent home, I was able to secure the surgery. Truly, if this person(couple) didn't up front $15000 for me I would have been sent home to save and wait and be put on a waiting list for the surgery. I would have suffered through the holidays in pain and unable to be a part of my kids life still. It truly was a miracle and this person did it without hesitation and I am so grateful to you, you know who you are. I just hope I can pay you back in time. I am so worried I won't be able to. And thankfully, you kept donating and we were able to move forward with the surgery.
Other God Things: Stanford is in the Silicone Valley. A cheap hotel, is no less than $200 a night. During the week you can't get a hotel, because of all the conferences from people like Google, McAfee and more. As soon as my adopted mom, Gail, found out about the surgery change, there was no question, she just showed up and picked us up out of our hotel and said we were staying with her sister, Aunt Ruth in San Jose, just about 30 minutes from the hospital. This ended up saving us over $3000 in hotel costs not including food and we had loving people around us to keep us company, even if I was in Aunt Ruth's master bedroom sleeping most of the time. Jeannie, my sister did come down just for a day or so and she took me took get a pedicure the day before surgery. Important things!! They took good care of Rob and always made sure he had a chance to go to Trader Joes each day. It was just a nice, comfortable safe place to be. I still can't believe she gave up her master bedroom, the only bedroom on the main floor, for me, and I am so appreciative of her for that. Thank you Aunt Ruth!
I know that so many more of my family and extended family and friends would have like to have been there, but it would have just been too much, so we appreciate you holding back and just praying and sending words of encouragement. I needed time to recover and not feel like I had to entertain or make sure someone got picked up or taken to a flight. It really was the best choice and so thank you for respecting that and for your understanding, plus it saved you a LOT of money!
The surgery feels like it was ultimately a success! Dr. Chang said it was a very classical straight forward surgery. He got in there and there were 3 offending vessels instead of the one they saw on the MRI. Two were main arteries and one a vein. I believe they just removed the vein and then they did their magic and placed the Teflon cotton ball stints between the nerve and the arteries. The amazing thing is that the brain starts fusing the Teflon to the nerve within 24 hours after the surgery. So one day out of surgery, my brain was already healing. The human brain and then human body truly is an amazing organism, can't tell me that God didn't create it. No way, no how, no chance it could be anyone other than God. I still have some pain, but nothing that has brought me to tears. I think most of the pain is surgery pain or post op pain. .
Another thing that was cool, is that the doctor barely took any hair off my head. I have seen so many people on my TN websites go through this procedure and many have had half their head shaved, some have had poorly done scars. They barely took an inch of hair. My scar was flawless! I feel very blessed and feel that the experience of my doctor made all the difference in the world.
Waking up from the surgery was scary! I could not feel my right toes. No stimulation made them move, nothing. It was scary, but finally, after about 2 hours that came back to normal. I was put in ICU. That evening a life flighted patient came in severely bad shape. He was a motorcycle accident patient, shattered his hip, broken legs, and more. It was so loud in there. Also, being a teaching hospital there were a lot of people in there trying to care for this poor man. They finally got him to xray, but when he returned he coded on the table and the next 5 hours I sat in my bed and listened to them do CPR, paddles, special meds, dialysis, and all sorts of stabilizing techniques. I was so scared for this man. All I could do was roll over and pray for him. I didn't know to pray for him to live or to die as I heard all the horrible things wrong with him. He was stable when I was moved out of the room the next morning. I wasn't able to be moved sooner because I was trapped in the corner of the ICU. But the good news is they got me to another room with someone who was a little off, and I looked at the nurse and begged for my own room. Jeannie my sister, explained what had happened the night before and I had my own room an hour later. It really saved me.
Open Brain Surgery was NOT what we were planning to do and it definitely changed our course of plans for the next 4-6 weeks or longer. The recovery is a lot harder than I had expected. I cry a lot. I even find myself feeling sorry for myself, which I have no right to do, being that God gave me this ultimate blessing. I have a lot of swelling in the brain that causes extreme pain. The doctor rationed it to feel like a severe concussion or head injury. I went days without sleeping more than 1-2 hours intervals. Finally, my doctor here at home, Doctor Rausch has been able to get me on some meds to help me with the pain and swelling and get some sleep. He has been so kind to me. The good news is at appears the surgery was success. I have minor neuralgia pain, but that is to be expected as the nerve has to have time to heal and they were really playing around with it in there. Also, that nerve was in really bad shape when we went in for surgery. It had been worn down for over 3 years and maybe even longer if you go with the theory that I have had this in some form since childhood. I also had open brain surgery:my skull was cut open, my dura sac cut open and who know what else cut open and it is just going to take time to recover. I need to allow my body to recover and lean on you my friends to help me through it. Patience isn't my strongest suit, so please pray that I will be patient with my recovery.
One really cool blessing, I want to share is that on Thanksgiving Day, we went to Rob's parents for the day. I just went and camped out on the lounger chair and probably fell asleep. Within 15-20 minutes, Bekah, Rob's oldest Daughter, Josiah, and Rob's brothers, Kit and Shane, had gone up in the forest and brought down the most beautiful Christmas tree for me. It was such a special gift for me and I still can't believe the kindness in their heart, them doing that for me. Thank you! I put hot pink lights on it this year to go with last year's decorations that are not up yet, but I have my tree and my pink lights and I am one happy girl!
It's hard recovering from Brain Surgery, I am not going to lie. I have moments where I have extreme fear if someone isn't home or nearby. (Probably, the steroids) And the pain is pretty bad most of the day. I promise you I AM RESTING! I also promise you that I don't take not one moment of this for granted. God gave me an opportunity at life again. I left a very, very, broken young woman with an empty hope cup and came back, not healed yet, but a wife, a mom, a daughter, sister, friend, and member of my community with my hope cup overflowing. I may be down for several weeks, but just wait, Rachel WILL BE BACK and better than ever!!!!
Thank you community, church, friends, colleagues, business friends, gluten free friends, and of course my awesome family for what you have done to make this surgery a possibility for me. Thank you for your prayers. Thank you for your encouragement. Thank you for sharing with your friends my story. The story isn't done yet though. I still have over $15000 in medical bills to pay plus the money that this couple who upfronted the $15000 so I wouldn't get sent home, I have to find a way to pay them back. So if you could just for a little longer keep sharing my story, and please believe God will provide, I will appreciate that. Please continue to pray for me and a quick healing without complications. I am just so happy to have this opportunity to be Rachel again and this is because of YOU! Thank you from the bottom of my heart!!!!
With Lots of Love,
Rachel Carlyle Edington
Here are just a few pics so you can see that the scar looks very good!
Help Rachel get much needed Trigeminal Neuralgia Surgery called MVD or Microvascular Decompression Brain Surgery. The doctors feel that this surgery is the best choice for her for getting back to a normal life again. If you would like to learn more about it you can go to http://www.mayfieldclinic.com/PE-MVD.htm#.UoJd1fnNlfQ.
When the initial surgery was scheduled it was a different type of surgery than this one and much less invasive. Since getting to Stanford the doctors feel that they MVD Surgery is best for Rachel so the cost of surgery went from $22,000 to around $40,000 overnight. The above link gives more information on what will be done. Thank you for your support.
Please help us get our Rachel back to a normal functioning life. We have watched her go from a person who has a zest for life, who loves to coach kids, lead bible studies, run a thriving business, spend time with her family & friends, garage sale, cooking and baking, be crafty, be the goofiest person in the room, always with a smile on her face and God's love in her heart, to a beautiful person who can barely function, hold her head up, stand up, and give everything she wants to into her family and friends. She still has all that love in her heart and still helps everyone around her encouraging them, and speaking into their lives but has no strength to function on a daily basis for weeks and weeks at a time. This surgery will save her life. Please help!
This is Rachel's Story.
My name is Rachel Edington (Carlyle). I am a loving wife to Rob and between us we have 6 beautiful children, 4 of which live at home and in addition to that we have an exchange student from Germany living with us who is a beautiful addition to our family. I own Gluten Free Mama, a gluten free food manufacturing business which helps those with Celiac Disease, including my youngest daughter, and those with gluten intolerance enjoy eating gluten free. I suffer from Trigeminal Neuralgia, a neurological disorder that causes extreme, intolerable pain in the trigeminal nerve of the right side of my head and face. I need your help to be able to get Gamma Knife Brain Surgery to deaden the nerve that is causing me so much pain and virtually stripping my quality of life away one day at a time. Will you help?
In January of 2010 out of the blue was diagnosed with a sudden onset of Trigeminal Neuralgia. In addition to that I was diagnosed with MS. Trigeminal Neuralgia is a neuropathic disorder that causes inflammation of the trigeminal nerve causing extremely intense pain originating from the ear through the face along the three branches of the trigeminal nerve. I experience constant debilitating pain from this disorder including massive electric like shocks that radiate through my nerve lasting 1-2 minutes at a time. The littlest things that we as humans take for granted trigger my pain including: bending over to pick something up, turning or moving head to fast, walking too much or too fast, wind that hits my face or ear, loud noises, (even my favorite worship music at church, rooms with a lot of people in it talking, kids laughing and screaming, etc.), combing my hair, brushing my teeth, washing my hair, being in a riding car the peripheral movement from the car moving and looking outside, sitting up for more than about 15 -30 minutes at a time, and more. The medications I am on to treat it make me very tired, weak, dizzy, difficulty remembering short term memory, difficulty concentrating, talking, and I sleep a lot. Trigeminal Neuralgia is known as the "Suicide Disease" because the pain is one of the worst pain disorders and many people commit suicide because the pain is so incredibly bad. On October 7, ironically my birthday, was the first every Trigeminal Neuralgia Awareness Day. I am one of thousands of people suffering from this painful disease.
I had Gamma Knife Surgery in December of 2010 and had instant relief. I was a normal person for 10 months. During those ten months I didn't take anything for granted. I was the best mom I could be taking my kids on several nearby road trips, hosting exchange students, our forever daughters Nichapun (Sara) from Thailand, and later Nicole from Germany, continuing to build my business, and then I met an old friend and we started courting and got married a year later on Valentine's Day.
I was told it might take two Gamma Knife Brain Surgery procedures and they were right. Dr. Soltys from Stanford University, a specialist in Trigeminal Neuralgia received my letter and contacted me. I sent him my records and he really feels the repeat Gamma Knife Surgery will fix the Trigeminal Neuralgia problem and thus give me my life back. The hospital has been so gracious to offer me a huge discount off the total bill, but I still need about $25000 to pay for the remaining costs and I have to have it up front in order to do the surgery. We just can't come up with that much money and so fast. So I need your help.
Why do I need this surgery? I need my life back. I need my hope bucket filled up again. I have no quality of life anymore, and have lost who Rachel is. I spend most of my days in bed, my kids see their mom in bed almost all of the time. It doesn't stop me from loving them and parenting them, but I am sure it is hard on them not having their mom be 100% and not being able to attend their games and events because I am too sick. I am in so much pain that I spend much of my day crying just from the intensity of the pain, and sometimes I feel sorry for myself, but most of the time I try to stay positive. My sweet husband has been so incredibly supportive, but I know this cannot be easy for him. I am unable to run my business anymore so he runs it for me. Then he comes home tired and cooks and spends time with the kids because I can't. It used to be my job to cook, it was my joy.
I am a cookbook author x2, but now I can't even gather enough strength to make a recipe that I know from my book, let alone create a new one. I have lost my joy in the kitchen, because I have no strength. This is hurting my business. Thankfully, many of my gluten free friends have stepped up temporarily and have kept my blog going and my FB page going. I am so grateful to them as well as my husband. I am on so much medication that it can't be good for me. I want to get off these meds and be normal Rachel. I am not asking to be normal...just normal Rachel. I sometimes have to take 2-3 bathes a day just to comfort me from my pain.
I miss my kids events, I miss being involved in my church. Before getting sick, I was the women's ministry leader at my church, Junior Bible Quiz Coach and very involved in other areas too. I miss being able go to church and be able to sit up and listen to the worship music and make it through the entire message. I miss being able to sit up in the family room and watch movies with my kids, or play games. I miss shopping with my kids. I miss traveling with my kids even if it is only to Seattle to see our family. I miss being able to drive. I miss my friends. I miss throwing impromptu parties just as an excuse to have a get together with friends. I miss being a friend to my friends. I miss being able to visit family and go to family functions. I miss being able to go for a walk or to my kids sporting events. I miss being the Gluten Free Mama. I don't want to be stuck in bed anymore. I miss my life.
We need to raise $40,000 to pay for this surgery. Will you help me get her life back?
After having two separate appointments with specialist at Stanford University, they overlooked Rachel's records, MRI and have examined her, the found that Rachel has two types of Trigeminal Neuralgia, Classical and Atypical. They also can see from the MRI that Rachel has a main artery in her brain laying directly on top of the trigeminal nerve and the nerve has significant damage from that artery, thus causing the extreme pain when she moves too fast, picks something up off the floor, sits in a car, stands up, etc, etc. They feel that the best outcome for long term success is to change the treatment plan to a surgery called Microvascular Decompression or MVD. It is more invasive and costs triple the amount because they have to open up her skull right behind the ear and place a rubberized shunt between the nerve and her artery. Then after the surgery she will spend one night in the ICU and two nights in the hospital. This surgery is more expensive and more invasive, but it increases Rachel's chance for a pain free life from 30% to 80%. The success long term is more likely as well. If Rachel cannot get her finances together and prove that she can raise or come up with the extra funds to do the surgery she will be sent home in pain. However, Stanford can do the surgery this Monday if we can raise the money. Rachel needs your help more than ever. She was barely hanging on just to get to stanford for the gamma knife. Returning home in pain is just a defeat that she is unable to handle.
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